The continuing adventures of my life not only as an artist, wife, adventurer, dreamer, aspiring female “Bob Villa”, and mom...but now as a widow and single parent...

Saturday, December 13, 2008

Catalyst for Change…

I know I may only be trying to justify David’s death…and maybe I want it to mean something more than my husband had a brain tumor and died. But I also believe that David fought so damn hard to live, it would be a disservice to him to curl up in a ball and give up. David fought to live, he fought for us. But it was even more than that.

David changed so many people. And I for one believe that us just being here, our mere existence, our interactions with people…we all have the capacity to change the world. And many of us do it without even knowing it. And I believe that David did change the world. And I also believe our love did as well. It’s like dropping a pebble in a pond. The ripples will go on forever...

David donated his body to the Neurology department in hopes that someday another family would not have to go through what we did. And who knows, that selfless act may be instrumental in finding a way to better treat or even cure Cancer. We will never know. But I do know that all the things we do in this world have the ability to mold and shape the future and the people surrounding us.

And I hope to be part of that someday. David’s death has brought more focus into my life. I feel like it was a catalyst that has propelled me forward…into a new arena I never expected to be in. I had always wanted to do something. Make my mark on the work persea…but I never had a philanthropy. I have since learned, you do not choose your cause. Your cause chooses you.

So, someday I hope to be the change I want to see in the world. Through experience, unfortunately I have come to learn that the system is not prepared for situations like ours. The system does not account for young caregivers. They do not expect you to develop a serious illness, disability or even worse…a terminal illness. And thus, there is not much support out there when you are going through it…especially during the time where the support is so imperative for survival. I will not go into one of my long diatribes here. Many of you who know me, know where I stand on this. But I do hope that someday I will be able to create or do something that will help other young caregivers out there. I believe that opening up a dialog on these issues is important. I also wonder what else I may do for caregivers or widow/ers in the future. This is no where near what I ever expected, but I am forever changed by this experience and I want to help others someday as well. Help them through the darkness. Let them know that they are not alone. Help them to navigate the mountains of paperwork. Direct them to where to find the support that is hidden amongst all the crap. And make them realize that there is always hope, although even now I do not always feel it. It is a dream. And something I will not be able to do any time in the near future. I am grieving and would not be much good to someone else going through what I just recently survived. But someday...maybe.

This all sounds fabulously optimistic during the light of day, but to be honest...in the dark I am a lonely, scared widow who is just trying to make it through another night.

But even in my darker hours, I know I can be whatever I want and become whatever I need. I just need to believe. David taught me that…David believed in me.

Skye, you have been amazing through all of this (from diagnosis to present). I believe that you gave as much strength as you gained. You have taught many the essence of selflessness, unconditional love, hope and dreams. You have continued on a difficult road and are showing your true warrior spirit in your personal quest to live and to help Alec live. I know you will one day teach that warrior spirit to so many others as they navigate the road you presently walk...you are actually helping others already and unknowingly. You are so incredibly amazing! I am honored to be your friend and to continue to learn from you.

You guys are awesome! With friends like these, it makes it easier to face the day. Knowing I have you and so many others by my side...giving me hope when I falter, being my cheerleaders when I need it the most. I am honored to have all of you in my life. You guys are amazing...

You may not realize it but you have already made an incredible difference to other caregivers on this journey (and those who will be someday) just by sharing your story here. As you have often said yourself, there is nothing quite so comforting as the realization that you are not alone in your darkest hours. Your words are a light in the dark for so many, my dear friend. Keep Shining...

Both you and Dave have taught me so much with the time I was able to spend with him. I can see that you were meant to be with each other because you both make each others unique qualities stand out and accentuate. I am honored to have learned from Dave and you and I hope to carry that on with me as a nurse/caregiver. You are an inspiration to so many people in so many different ways. Dave continues to inspire people through you everyday...

And I do share your view, that we really can make a difference, in so many areas. At one level, you could say that's simply because life would be a sorry experience if we did not learn from it, or share what we have learned.

But it goes much deeper than that. My commitment to these causes has become a burning passion, and I go beyond, wherever I can. And I'm enormously aware that the time available to me to champion them is not infinite.

We're not down here for long, any of us, and it's time to show commitment to what we believe in. Time to do something.

We have the luxury of time. And it's our absolutely responsibility and privilege to use it.

I know what it is to not believe in myself. But, Skye, I believe in you. And I know that at times it feels that other people don't understand. But I do...at least some of it. Thank you for this post. You so eloquently articulated your feelings. I love your writing, Skye.

Amy,Having you help care for David in his final few months was such a gift. You were so amazingly gentle with him. And although he hated to have anyone do it but me, you made the transition for having a little help for me easier. You won him over and he was never uncomfortable around you, although it was so difficult for him to need so much assistance. And those brief visits gave me the help I needed so desperately at the time. Thank you…

Roads,Yes, I have begun following your journey and read both your “widower” blog and your blog about the rest of your life, perspectives and the such. You inspire me because I see how very far you have come and how very much you have been able to accomplish through your own painful journey.

We have very similar philosophies, at least by written word, about life. Thanks for checking in…

Jackie, Thank you for believing in me. It’s ironic….I feel the same way about you when I read your blog. Sometimes as I read it, it is as if I wrote it…because it mirrors my own thoughts and emotions so much. I can relate to your words…because we walk a similar road right now.

Sara,I am so glad that my blog helps you. I know what you mean by crying with relief…in the knowledge that you are not alone and someone out there is experiencing the same or at least similar pain you are. It helps and I am glad I can do that for you. Everyone’s presence on my blog helps me as well…